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Question about how long you continued chemo??

lmliess's picture
lmliess
Posts: 331
Joined: Dec 2008

Hello - I just completed my 11th Folfori plus Avastin chemo this week. It is kicking my butt! I had the infusion Wednesday and didn't even get out of bed Thursday! Finally today I feel a bit better.
But here is my issue....I had a reoccurance in May in the plureal area of my lung. So we started the chemo early June...Folfori with Avastin and the 46 hour 5FU pump. I had a CT in September and there were 'no signs of mets' and my last CEA was 3.7. My oncologist said if I was handling the chemo well we would do maybe 2 more monthes but since it is startingt o wear on me, maybe it is time to stop and keep scanning and testing closely.
I want to stop but I guess I am scared. I take A LOT of supplements to build my immune system and part of me wants to finish at 12 and let my body recover. I am afraid if I keep beating it down with chemo, how will it ever be able to recover and function on it's own?? And if we just keep doing chemo, won't those cells eventually get resistant to the chemo?
So I guess I am asking what have you all done regarding your chemos and when to stop??

Thanks!!

Linda

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Hey Linda,
I feel any time you can get off chemo and let your body mend from the poisen...you should. This is just my opinion but we all know that chemo is not our friend. I was NED (I prefer to think of it as on vacation) for 7 months before a lung recurrance. During that time I was weaned off the chemo thru maintenance and did none for 3 months...until it came back. At that time I restarted Folfiri w Avastin.... had just 2 treatments that rid 1 met and cyberknife rid the 2nd met. I am now back on maintenance and as soon as CEA is back to normal (almost there) I will discontinue chemo. THIS TIME... I have already started supplements but will be seeing a doctor for alternative methods (yes, TCM is in the plan too) I would not feel I have done all I can do for myself if I do not try everything that MAY work...I mean..why not? Whats gonna happen...a recurrance??? Been there...done that. In all reading I have done on chemo it is almost a given that eventually what you are taking your body will build up an immunity to it. Just like with Tylenol..or pain pills.or anything you take on the steady. Anyway.... thats just my 2 cents!! Take care and good luck.

Jennie

damama24
Posts: 175
Joined: Nov 2009

Hi Linda

Wish I had a good answer for you. I have been on chemo for 15 months. Folfox for 13 rounds and now on Iriontecan and Vectibix. I will have the 16th round of this combo on Wednesday.I'm considered inoperable at this time so the chemo is all I have right now. The grind is getting old but I hold on to hope that the chemo will eventually make me operable. I often have thoughts of just stopping everything and seeing what happens. If my CEA ever got down to normal range I would consider a chemo vacation. I'm fortunate that I handle the chemo well and have few side effects. I think it all comes down to you and what you want. If the chemo was causing me alot of side effects and making me feel miserable I probably would have quit a long time ago. I entertain no thoughts that I will ever be cured, just want to maintain a somewhat normal life. Like I said I wish I had a good answere for you but you have to be true to yourself and do what is best for you. Best wishes and good luck.

Deb

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Decisions....

There's been a lot of research lately, that seems to indicate that the
immune system can become sensitized to the chemicals given off
from dying cancer cells.

The problem with cancer, is that it's only one of our good cells
that's been damaged in such a way, that it can no longer respond
to our body's signals regarding how to stay behave, or remain alive.

The damaged cell then attempts to stay alive through a very basic
method called "the fermentation process". It begins to take in glucose
(sugar), stealing it away from our system, and using it in the fermentation
process to stay alive. The glucose is taken in, converted to lactic
acid by the cancer, and the lactic acid is converted back into glucose
by our liver.

Some people's immune system recognizes the damaged cell, and
removes it from their body. With other people (like me), the
immune system didn't pay attention to the damaged cell, and
allowed it to continue growing by it's own means. Those damned
cancer cells are lil' stubborn tykes! The want to survive, and manage
to do so pretty well!

The research now, seems to be indicating that our immune system
can often become sensitized to the chemicals that are given off by
a dying cancer cell, and use that sensitization to go after any other
cancer cells in our body.... any other cells that are giving off that
same chemical property.

That's pretty amazing stuff. It might be proving what's been noticed
by many researchers for quite some time...... That very often, after
"chemo" or radiation is used to successfully kill cancer cells, the
immune system seems to become energized, and does the rest
of the work by itself!

That happens -if- the immune system is strong enough to do so
after the chemo or radiation. It's another reason why the industry
is starting to use less treatments, and give some time between
treatments....

Our immune system is an inherent part of our survival. Too many of
us have overlooked that for too long. A healthy immune system may
not "see" a cancer cell initially, but it appears that it can be "taught"
to "see" a cancer cell, once it knows what to look for.

If that works out to be an absolute, then with all present cancer treatments,
"less" will indeed, be "more".

Just a lil' brain fodder!

Think healthy!

John

lmliess's picture
lmliess
Posts: 331
Joined: Dec 2008

for your responses. I truely feel like maybe less is more in my case. My natural path just included IP6 and Curcumin on top of everything else and my onc is all for it. I eat better and I want to start exercising more so I really believe in my heart that if I nurture my body it will hopefully do what it is supposed to do.
After how I have felt these last 2 rounds, I just don't see the benefits if by chance we got all the cancer that was lurking. I can only be causing extra work for my organs to flush it??
Anyway, I get my CEA tested again this week, so I pray it comesin low after I had my month off of chemo between 10 and 11.

Thanks!

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

I really believe there comes a time to stop....I remember when I was doing oxy and xeloda...I did the 6 oxys but like you I could not get out of bed by the end.....I felt finished whipped done. Went to my GP and asked about doing the final round of xeloda and she said enough already! So we stopped. I also understand the guilt that we all feel if we are not doing enough chemo....gotta fight on and kill those cells.

hoping for low low CEA for you and maybe a little break

hugs, mags

suz_3
Posts: 17
Joined: Nov 2010

Hi Linda!

Funny you mention this...I have been asking myself this same question. I did 12 rounds of Folfox with oxy from November '09 to April of'10. I then had a recurrence in my ovary, had surgery and then it went to my liver. I have now completed 6 rounds of Folfori with Avastin and the pump and I am just DONE! I am feeling worse with every treatment-my nausea is out of control. My husband and friends seem to think that I have lost my mind when I think of stopping, but I have just had enough. I have a scan this Wednesday, so maybe that will help with my decision.

I will pray that God will guide you:).

Suzanne

John23's picture
John23
Posts: 2140
Joined: Jan 2007

For those that are considering stopping chemo...

You have cancer; It doesn't usually go away by itself.

Chemo can kill cancer tumors, and radiation can kill cancer tumors;
there are also other new techniques and procedures that will kill
cancer tumors..

And.... there are "other options" and alternative medicines that can
also kill cancer tumors and cells.....

No matter what you use, it is important to build up your immune
system as much as you can, if you expect to beat cancer. You can't
just stop everything and sit around waiting for the next shoe to drop.

So..... either add an alternative medicine to your kit, along with
the chemo you're sick of, or use an alternative instead, but please,
don't just sit around doing nothing.

A cancer cell doesn't stop trying to stay alive, and neither should you.
You have to do whatever it takes, just like that cancer cell is doing.

It's important to kill as many cancer cells as you can as fast as
you can. If you've been using chemo, then while you're taking that
"break" from chemo, try an alternative. You have nothing to lose,
and everything to gain.

But for cryin' out loud, don't quit -any- treatment and just sit and wait,
do something; try something else.

Think healthy!

John

lmliess's picture
lmliess
Posts: 331
Joined: Dec 2008

My supplement regime is pretty 'big' and I plan on juicing, exercising, mediation, the whole works. I obviously can NOT go back to how life was before cancer. I would like to just give my body a chance to rebuild the immune system. Which I have mentioned before my natural path has me on a lot of supplements for that. And also supplemetns to help stop mets.....MCP, IP6 and curcumin. I definately eat healthier, (although I AM having a glass of wine this evening to celebrate getting through another chemo....red, so it should be good for me!). So no, just because I want to end chemo does not mean I am sitting and waiting....it just gives me chance to start on a healthier way of life, without chemo knocking me down for a few days where all I can do is drink a Diet Dr Pepper or eating something not so healty because that is all I can get down.

GREAT suggestion and thank you for pointing this out!!! :-)

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi Linda

I caught this post from you.

Diet Dr. Pepper and all diet sodas are not a good idea to be doing. I've read articles on this subject.

They contain ASPARTANE - this is the artificial sweetner and this ingredient has a direct link to liver cancer, primary not mets.

You'll be better off if you just have the real thing when you crave one. As always moderation in anything we touch is best.

Just wanted to pass this information along to you.

-Craig

lmliess's picture
lmliess
Posts: 331
Joined: Dec 2008

Wednesday for your scan. Same day I am getting my CEA tested again.

suz_3
Posts: 17
Joined: Nov 2010

Thanks! I don't want to just quit and do nothing either, however...I would just like a break. The holidays are my favorite time of year and with three small kids, I would love to feel great! I don't want to spend them in the bed sick with nausea.
I don't know what will happen if I just take a break. Anyone have any answers?

To John: I enjoy reading your responses. I admire the research you do and all of the information you give us. I HATE chemo, but am scared to try alternative methods. I have always been a "by the book" kind of person and don't think now is the time to branch out. However, maybe the results of my scan will change my mind.

Suzanne

John23's picture
John23
Posts: 2140
Joined: Jan 2007

There's been so much misconception and confusion, regarding
"alternative" medicine. Many individuals seem to believe that
the choices are "either one, or the other", not understanding that
some "alternatives" can be used as an adjunct, and very successfully,
at that!

Traditional Chinese Medicine is only an "alternative" to those
that haven't been using it for their entire lives. In many countries,
it's used both side-by-side, and along with, western medicine.
And of course, it's also used alone, too.

But there are many other "alternatives" that can also be used
with western medicine, to enhance the effects of western medicine.

I'm not familiar with most of the other "alternatives", since there
are so many that seem to erupt from the ground whenever there
seems to be a public interest in some "finding". I guess I'm just not
into the high profit mentality? Apricot seeds anyone?

For instance: Fiber is good, but adding it into every food
product is only actually doing one thing: Providing more profit
to the manufacturers that now have a way to add ingredients to
their product, that usually got thrown out. "Fiber" is waste. It's
the hulls and bark and skin and crushed seeds; the garbage that
always got filtered out of the finished product and sold to
farmers, or got thrown out. Now.... no waste! They can add it
like a filler to every product they make, and call it "healthy".
I find it humorous, others find it "healthy". Some research and
understanding about "fiber" in the diet might be worthwhile for
those not so aware of the dollar signs involved.

Many of the "alternatives" actually offer nothing of benefit. Some
manufacturers have people believing that your body can get
oxygen into it, from other than your lungs! Imagine that? Wow.
I can't locate any information regarding how.... biologically....the
body can possibly do that! I had not been aware that our intestines
can do the job assigned to our lungs!

The science of TCM has been around for over four thousand years.
TCM is not "new science", yet "new science" is basing many of it's
drugs on the thousands of years old remedies... go figger...

You can use TCM along with chemo, radiation, etc... It is used in that
manner in Asia and other countries; it's not a far-fetched concept!

You -do not- give up your normal screenings and tests, nor do you
give up your present physicians, all you do, is add TCM to your
schedule, and make use of the benefits of it.

TCM is not costly, but most insurance does not cover herbal treatments.

If there's any fear of doing anything medically, it should be about
doing things that are known to cause cancer. And as much as I hate
to keep reminding people...... Every chemotherapy drug is a known
carcinogenic. Every form of Radiation is a well known carcinogenic.
And both are extremely damaging to the basic immune system.

To -not- fear all of that, and take it unquestioningly - yet regard a
science that's served billions upon billions of people for thousands
of years without having caused the problems that "modern medicine"
causes, is beyond my comprehension.

Anyone can use TCM along with whatever they're already using.
You -do not- have to give up one thing to try another.

And.... TCM is now most widely used to thwart the side effects
of chemo and radiation, without the side effects caused by the
anti-side effect medications!

Read this:
Integrating The Best of Conventional and Complementary Approaches to Cancer

America Cancer Society

Chinese Medicine and Cancer

The Management of Cancer With Chinese Medicine

List of Clinics in the United States Offering Alternative Therapies

Review of Acupuncture in Cancer Care

There ARE alternatives!

Stay well!

John

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

You probably know my story but I need to tell you more about how I made my decision to stop chemo in 2004.

Surgery had never been an option for my stage IV condition so all I knew to do at the time was chemo, folfox w/ avastin for 16 treatments, 8 months. I was pretty weak when I started chemo so it really took a toll on me over time. I watched my CEA drop from 35 to 5.1 and had told myself that if it ever got to 5 I would take a break. On Nov 12th after literally stumbling (neuropathy in my feet was bad) to my onc appt. and him wanting me to do another 4-7 months of the poisons. I told him I couldn't do it anymore and that I was taking a break to try some things on my own. That was a Friday and on Saturday AM, I completely changed my diet. Juicing and a 90% alkaline diet were a few of my strategies. I knew there was some things I couldn't change but there were many that I could so I concentrated on them. I stopped using anti-perspirants, bleaches, and toiletries with chemicals in them. No more steroid or antibiotic laden meats, heck I only ate chicken once a week or so. I went all organic, perservative, MSG, and high frutose corn syrup free. I didn't think I could take any chances so I didn't. I took my own food when I went out of town. I didn't eat out for 6 months. Yes it was hard, but I thought it was much easier then chemo and I really liked how quickly my hair and skin responded to my changes. I thought if my outside was looking better then my insides had to be too.

I went back in mid Jan 05' for scans and bloodwork and my CEA had gone from 5.1 to 3.7 and everything else looked stable so I kept it up. 6 months later I heard NED for the first time ever and I had never had any surgery for the tumors! I've been very fortunate since then.

Now that all said I have to tell you that it was one of the hardest decisions I have ever had to make. I absolutely knew it was the right thing for me to do but I also knew I had to fight the ******* cells in other ways. You have to be comfortable with your decision especially if things don't work out in your favor. You can't have regrets and be ready for the naysayers, there are many out there that don't understand. My oldest brother, a doctor was furious with me and my mother thought I had given up. What they didn't know was that I had just started to really fight!

Google chemical pH balance of foods and get a chart (notice table salt is extremely acidic but sea salt is extremely alkaline). I got some test strips from my local health food store and kept mine as close to 7 as possible. Linda, I bet your naturopath has a chart, mine gave me one.

Good luck with your decisions and let me know if I can help you in any way.

Lisa P.

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I had 12 rounds of FOLFOX and thought I was NED. At the first 3-month CEA check it was up, and we found cancer in 3 para aortic lymph nodes (behind my heart, next to my spine). So now I'm on FOLFIRI w/Avastin. Just 3 tx brought my CEA back to normal. I have a PET/CT this Friday. I think it is going to be clear. So then the question is how long do I continue chemo?

Chemo is really tough on me. I've had all sorts of unusual issues. Last Friday I had an allergic reaction to Irinotecan. They stopped it then - I didn't get the rest. I got just over 50% of my dose.

My onc said his plan is to get me to the point where my CEA is normal and no cancer is seen on scans, and give me chemo breaks. But that I will be on chemo the rest of my life, because he is pretty sure mine is too aggressive and will keep coming back. Based on what has happened so far, he is probably right. I think he is going to want to keep me on chemo for the standard 12 cycles. But I might not agree to that. I got a second opinion from Duke about removing my nodes, but the surgeons on the tumor board did not recommend it. Tough decisions lie ahead... Third and fourth opinions? How much chemo?

Sorry I'm no help to you - I'm just stuck in the same rut.

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